Sexy Summer Strategizing for Chronic Illness

Memorial Day Weekend has come and gone, and y’all know what that means! Summer has unofficially started! Wearing less and going out more, it’s going to be hot hot hot!

Just kidding. Well, I live in Florida, so it WILL be hot hot hot, but not in the “sexy summer fun” type of way I see popping up on magazines’ social accounts. This is the time of year when I go from being a smug Floridian “living in paradise” to an embittered shut-in glaring at most places north of us. (Yes, even you Atlanta. I lived there for two years and experienced some crazy pleasant breaks in the summer heat a few times so don’t @ me. Texas and Arizona, I’ll give you your inferno-esque due.)

But for me, summer’s unofficial start also meant a bunch of doctor’s appointments for “summer strategy sessions,” as my cardiologist puts it. And I’ll tell you what, the outlook feels bleak at this moment. I know many autoimmune and chronic illnesses are affected by the heat, but for the purposes of this blog, I’m just dealing with post-orthostatic tachycardiac syndrome (POTS) and a positive antihistone blood marker that has all the symptoms of lupus, requires a lupus drug but isn’t quite lupus. Still testing to find out what it is, or if it’s just a precursor to lupus.

I checked with my cardiologist the other day to see if I was imagining that my symptoms (blood rushing, heart pounding in my ears, nausea, dizziness) start as soon as I hit the garage. I’m not. Apparently, the heat’s effects are immediate.

Ok, so stay cool. But I can still do the pool and boat because I”ll be in the water, right?

Well the rheumatologist confirmed that the crazy rash I got being out in the sun last weekend was from increased UV sensitivity, due both to the anti blood marker(s) and the lupus drug I have to take for it. I didn’t burn – I kept applying sunscreen all day, but the itchy bumps that appeared everywhere were worse. Apparently my superior Italian melanin has finally met its match!

So I just need to avoid the heat and sun. In Florida. In the summer.

Last summer was rough. I was the sickest yet, but didn’t have much in the way of diagnoses or medication yet. We were on the right track but still testing. So I felt like garbage and couldn’t go outside. I didn’t have “strict doctors’ orders” yet though, so I was embarrassed to keep explaining to my family and friends. (Honestly, some of them thought I was being a baby about it, and after awhile, it gets old trying to explain an ailment that’s only partially diagnosed.) I was in a deep depression cycle, and it didn’t really end until the first “cool” front in late October.

Really just an excuse for a Ryan-Phillippe gif. You’re welcome.

I refuse to go there again this summer.

The first thing I focused on was taking care of my skin, both from a comfort standpoint (itchy, dry skin, rash or no rash, is lamentable), but also to soothe my vanity.

Before we dive in and I start extolling the virtues of more expensive-than-average and just-plain-expensive skincare items, know that I’m not a beauty product snob. (My cheapest favorite: Cetaphil bars are my go-to face and body cleanser. ) I use what works, but as I get older and have some health issues that affect my skin, it’s been a little more complicated and expensive.

I researched good sunscreen for people with lupus or taking lupus medication. A lot of dermatologists seem to recommend La Roche Posay sunscreen, so I’m trying the Melt-In Sunscreen Milk with SPF 60 which is $30 on Amazon Prime.

I purchased La Mer Creme de La Mer in the duty free shop on my way home from Rome last fall, and loved it. But when I ran out, I tried to go back to a cheaper (but actually not that much cheaper) option. Enough of that. My always-dry skin is way too dry with these illnesses and medications, so I’m going with what works best. The 1 oz size lasted a good several months, although truthfully I wasn’t exclusive with it, so I’m interested to see how long it lasts this time around. Surprisingly, the heavy Moisturizing Cream doesn’t make my face sweat as I thought it would in the heat and humidity, so I went with that instead of La Mer’s Moisturizing Cool Gel Cream (best for normal-to-oily skin) or Moisturizing Soft Cream.

I also got samples of La Mer’s Reparative Body Lotion, because of the “healing properties” of the “miracle broth” and tried it on the sun rash this week. Truly amazing results. FYI – a cosmetics source I know says the Lotion is more effective than the La Mer products cost, but for a reason. They’re super effective and feel amazing, so you’re not *just* paying for a brand name.

One last thing re: La Mer. I’m linking to their site because if you sign up your email address, you get $75 off a $350 purchase (this being La Mer, you’ll hit that if you get two products or certain sizes). But overall, shopping on their website is kind of a pain. I’ve experienced technical glitches and had to get customer service help every time. So I’d recommend shopping for these products elsewhere, preferably somewhere where you can earn rewards like Nordstrom or Sephora (both sell it, as does Neiman Marcus & Bergdorf Goodman, but neither have a rewards program). Nordstrom is my favorite because it has ShopRunner with free two-day shipping. If you go to the Nordstrom counter, they’ll set you up with good size samples to take home and try different products. Violet Grey is another good option when they have a sale (infrequently!) because it’s the only place I’ve ever seen a discount on these high-end beauty brands.

The next prong of my summer survival strategy was getting a Sleep Number bed, which we did during the Memorial Day Sale, which saved us $1,000. It won’t get here for 3 weeks, but I’m really excited. I’ve thought about getting a Sleep Number bed for years, but never actually tried one until our friends bought one and couldn’t stop raving, and their recommendations are hard-won. As some of my pain areas are being treated, I’ve been able to identify specific areas that are worst when I wake up. We stayed at the Sandpearl Resort last week, and I woke up in almost no pain, which NEVER happens in my own bed. Quality sleep is a huge problem for POTS patients, as are chronic fatigue and pain with both illnesses. As much as it pained me to buy a new mattress when the other is only 3 years old, if I can get better sleep and eliminate some pain, it would be well worth the money. The sale and 100-day window to test it out made it a no-brainer. I might need a separate post to share the in-store shopping experience, which was pretty cool. I’ll post the verdict on whether the bed is as delicious as I’m hoping in a few months.

But of course none of this changes the fact that Florida is unbearably hot, with no respite, from the end of May to at least the end of September. So ultimately, I’m going to have to figure out ways to be somewhere else while the children are on summer break.

A benefit of being a PR consultant is that when I *am* able to work again, I work from anywhere. Having an airline pilot for a husband helps in that respect as well. This year, I was still kind of reeling and adjusting financially from the loss of my income. It’s still been less than a year since I had to essentially shut down my consulting business because I was too sick to work. So frankly, I didn’t save enough for two months out of town. A road trip to the Adirondacks and family might be the extent of it this year, but I’m looking ahead to next year so we can save enough to get to cooler climes. More on the search for location(s) to come.

Why am I basically giving a public run-down of what I did last week? Partly as therapy; it’s not as heavy once it’s on paper. Partly as information for my friends so I don’t have to explain my limitations every time I have to say no to a boat trip or outdoor outing. Partly because I think I find really good products that y’all might want to know about. And partly because summer can be a wonderful time, no matter your location or circumstances, but it’s not rose and lobster bakes all day, every day for anyone. But like anyone else, I’m going to post palm tree pics from the Sandpearl pool on Instagram instead of the sun rash it got me. So instead I’ll stay real here. Happy summer!

Believe me, May, I’m aware of mental health! But I’m still grateful for Mental Health Awareness

May is Mental Health Awareness Month. And while I’m an avid proponent of building awareness and ending the stigma, unfortunately, the goings-on in May tend to make my own mental health a little too hard to ignore.

I just got home from a short trip to the mall because I had to escape my house for an hour. (No need to dissect the mall as my choice of respite; we’ll save analysis of my small compulsive shopping problem for another day.) I needed that little escape from my house because I could feel the anxiety building, the physical effects starting to take hold.

I could feel my breathing become shallow and sweat start to form on my forehead, despite the air conditioning. The swarm of thoughts that start to build too quickly to really register swirled. I couldn’t focus and the irritability was right at the surface.

Why? Because being “Mom” became overwhelming. Despite the fact that I’m a ghoul who finds their children’s attention anxiety-inducing sometimes, I’m the center of their universe. And sometimes that spotlight is too much.

The subsequent guilt at realizing what was causing the anxiety piled on more. After all, how ungrateful can I be? I have two healthy daughters whom I don’t have to worry about feeding or clothing, and they go to an amazing school. My husband is a hands-on dad, one who is often available when I need to take a break.

In short, what the hell do I have to be running from?

But the thing is, like any other illness, mental illness does not give a f*ck about any of those things. I have battled anxiety and depression for almost 20 years, and yet I still have to remind myself that I can’t rationalize my way through an episode. I was, however, able to catch it before it became an anxiety attack, but I’ve been playing that game all month.

My husband and oldest daughter have May birthdays, and we just celebrated my daughter’s First Communion. If you’re not familiar, that’s one of the biggest moments in a Catholic’s life, and as such, involves no small amount of preparation or celebration. Additionally, my husband’s grandmother also passed away, and we had to travel to Miami for the funeral services.

But really, May is a LOT for everyone. The end of the school year, whether the year ends in May itself like it does in Florida, or June like it does in other parts of the country, you’re busy with the related projects, exams, awards ceremonies, proms, graduations, end-of-the-year parties and summer planning. I’m not just talking about planning for fun summer vacations. There’s also planning for summer childcare, daycare or camps. You’re shelling out money left and right.

Even people who aren’t parents or students can be affected by the ripple effect, maybe having to work around a boss’s schedule. Maybe you’re part of a professional society or volunteer organization that breaks for the summer and has end-of-year events.

There’s Mother’s Day in the US and many other countries, bringing with it plans and gift shopping, or maybe the grief of a lost mother or child, anxiety over fertility struggles, anger at an estranged family member.

You get the idea.

If you’re like me, the logistics of handling everyone’s schedules and making plans at this time of year is on par with the stress level around the Christmas holidays.

Then again, you might be reading this and have no idea what I’m talking about. After all, I DO suffer from anxiety!

But this is the reason why I’m grateful for Mental Health Awareness Month and awareness campaigns like Bring Change to Mind and Okay to Say (for which I used to handle PR) in the US, Heads Together in the UK and many more. The aim of things like an awareness month is to create more touch points where people feel they can talk about mental health and mental illness. It’s an opportunity carved out to hear people share their experiences or to offer support.

Talking or writing it out isn’t always enough (thank you, Cymbalta and Xanax), but sometimes it is. Sometimes it’s enough to help you identify what you’re feeling, and sometimes that’s enough to move on from the “moment” (using that word loosely, as moment can be hours or days).

“Building awareness” is often knocked as not being action- or results-oriented enough, and that can be true, especially in my industry. But with an issue that affects so many millions of Americans and millions more around the world, yet is still so taboo to discuss, making people aware that mental health is as important as physical health and should be okay to discuss is a pretty worthy goal.

As we finish out May, let’s strive for that.

The author, tired AF, after First Communion & the funeral, before the birthday party and in the middle of the wild schedule that is May.

Cheer for the Orange & Blue [J. Crew sale]

College football reigns in the South, , and Florida is no exception. But we don’t just rep our universities at tailgates. From conference rooms to pub crawls to advisory boards to College Day at the Capitol to college friends’ weddings, alumni wear their colors proudly – and in color cases like ours (orange and blue), loudly – year round. And in those cases, a t-shirt from Fanatics.com isn’t going to cut it.

Alumni from places with easy color combos, like Georgia (red & black), Alabama (crimson & white) or Ole Miss (navy blue and red), might not be on a constant hunt. But when your school’s colors are a very specific deep orange and a very specific royal blue, you can’t just run out at a moment’s notice and be sure to find the perfect outfit.

So even though we’re three months out from college football season, when we see a sale that’s overflowing with college color goodness, we’re shopping. Enter J. Crew’s Extra 40% Off Sale Styles sale. Here are some of our favorite selections. True, we’re heavy on Gator colors, but we’re sharing the orange with our Auburn & Miami friends.

And just to show there’s solidarity in fashion, we’ll even share this link for some good Florida State options – even if it causes us some physical pain…

  1. Flutter sleeve scoopneck tee – $10.99 (plus extra 40% off)
  2. Silk button-up
  3. Pleated-front sailor skirt in stretch linen – $69.99 (plus extra 40% off)
  4. Supersoft long-sleeve T – $18.99 (plus extra 40% off)
  5. Ribbed scoopneck T-shirt in TENCEL™ – $19.99 (plus extra 40% off)
  6. Midi wrap dress in allover eyelet – $76.99 (plus extra 40% off)
  7. Supersoft Supima® raw-edge V-neck T-shirt – $15.99 (plus extra 40% off)
  8. Strappy midi knit dress – $47.99 (plus extra 40% off)
  9. Driving moccasins in suede – $29.99 (plus extra 40% off)
  10. Pointed-toe slides in suede – $34.99 (plus extra 40% off)
  11. Striped enamel hinge bracelet – $19.99 (plus extra 40% off)
  12. Pave resin earrings – $16.99 (plus extra 40% off)
  13. Cora slides with buckle in suede – $46.99 (plus extra 40% off)
  14. Mini beaded drop hoop earrings – $11.99 (plus extra 40% off)
  15. Tippi sweater – $71.99 (plus extra 40% off)
  16. Ruched ponte sheath dress – $89.99 (plus extra 40% off)

Fresh Produce

There’s something so cool & summery about fruit & vegetable prints. It’s more kitsch than camp, but our feed was full of these colorful prints today. Since we’re still coming of the fun of the Met Gala, let’s keep it light with a full serving of fruits & veggies.

  1. Dolce & Gabbana Vegetable Tin Print Dress – $2,315
  2. Rails Madison Strawberry Wrap Dress – $178
  3. MSGM Fruit-Printed Dress – $845
  4. Modcloth Sentimental Special Sleeveless Dress – $79
  5. Parker NY Millie Dress – $318
  6. Staud Kiwi Blossom Small Salad Dress – $215
  7. Staud Maracuya Dress Fruit – $215
  8. Staud Pomelo Playsuit Ivory Crudite – $225

Met Gala Musings

By 11 a.m. the day after The First Monday in May, we’ve seen all the looks from “Camp: Notes on Fashion.” So what we’re really interested in now is the gossip of the evening.

Which celebrity iced out another? Who got sloppy drunk? Who did our celebrity crush hook up with? (What? We’re only human here.) Alas, we’ve misplaced our Derek Blasberg this morning, so we’ll just stick to a quick review of our favorite Met Gala looks. Florida does love camp, after all.

(Images are clearly not ours. We were tending to children’s competitive soccer tryouts in Clearwater last night, not ascending the Met steps.)

Our beloved queen, Celine

On Realistic Expectations, or, “How Lin-Manuel Miranda Brightened My Day — Again”

Day 2 of a Chronic-Fatigue-As-Caused-By-Antihistone-Markers bout. I’m EXHAUSTED. I’m also wildly frustrated. Given the well, chronic, nature of autoimmune symptoms, it’s really hard to build momentum, and I feel like I never make any progress.

Progress on what, you ask? Well anything, really: work/rebuilding my business, cleaning, furniture hunting/decorating (good LORD, that’s a topic of its own), etc. Not exactly Lin-Manuel Miranda levels of creative output, but important nonetheless.

This made me feel better.

I realized that even though I know most celebrities have teams of people handling their business, I always think of Lin as a one-man band. Oh, a collaborator to be sure, but someone who handles all of his projects, travels, writing, etc., by himself. One more way he’s separated from the rest of us. How reassuring to know that in order to create all of that magic, he might need more than a Google Calendar reminder!

LMM looms large in my mind of late because we’ve just had 6 weeks of what I refer to as a “Hamilton Intensive,” as my daughter chose Eliza Schuyler Hamilton for her Famous Americans Project. Several weeks of study, prep and presentation, all while listening to the “Hamilton” soundtrack, was capped by finally seeing the show in Tampa. More than once during these weeks, it’s occurred to me that Lin is only a year older than me.

It’s not a comfortable thought.

Look what he’s accomplished! (No, seriously, look. Unbelievable.) Meanwhile, I successfully responded to a few texts and emails today. I used to write historical fiction while getting straight A’s, playing sports and nurturing a script project I called “Dodson’s Creek,” named after my best guy friend (on whom, for the record, I did not have a crush by that point). I was a smart, overachieving emphath! What happened?!

No, don’t worry. I’m not really weighing myself against a once-in-a-generation talent. But we do compare ourselves to others’ successes. It comes up briefly, a fleeting comparison that asks, “Why couldn’t I have done that?”

Reminders, like LMM’s tweet, that there’s always more behind the scenes, are balms to that itch of comparison. No, no one does it all on their own. No one has it all together. Everyone makes mistakes. Everyone needs help. We know all of that. But when someone shows the work, the process, the team, the anxieties experienced – that’s where it really connects.

Some things, like shared anxieties, can affect all of us at any point and make us feel like we, too, can overcome! Others, like a full team working with/behind you, don’t come until you’ve reached a certain level of business or financial success. But that’s still helpful to know because you’re not paralyzed by chasing unrealistic expectations of what one person can accomplish.

I’m no less exhausted as I reach the end of this post, but I have reached the end of writing a post! I’d call that progress, and all thanks to a tweet-behind-the-curtain.

Resolving the “New Year, New You” Issue

As a PR pro who’s had to comb through editorial calendars for client opportunities over the years, one of the most reliable issues to plan for in almost any publication is January: “New Year, New You!”

new-year-new-you

It’s not just lifestyle/beauty publications (but don’t get me started on the body image witchcraft and gross expectations that many of those sell!). Tech, general business, sports, education, insurance — they’re all going to feature some type of article on resolutions or “best practices” to set something up for success in the new year.

No surprise there. We all talk about New Year’s resolutions: who makes them, who doesn’t, who keeps them, who resolves NOT to make them… I typically fall into the latter category, mostly because I would never intentionally set myself up for failure. Last year I made the mistake of resolving to use a written planner, rather than just relying on my Google Calendar. And well… I should probably give that its own post as it’s a great way to understand your host’s personality! Yada yada yada I didn’t keep my resolution.

But 2018 has been one of the bleakest and most painful I have experienced. Judging by my Twitter & Facebook feeds, many people would agree right off the bat, but for me it has nothing to do with “the world on fire,” tragic news stories, the continued descent of our politicians into power-hungry gridlock or the general sense that humanity would like to rip its collective heart out.

For me, “Peak 2018” is diagnosis after diagnosis of debilitating chronic illnesses. A categorization of being a “7 on a scale of 1 to 10 in terms of disability,” with only a “hope” of someday getting daily life to a “3.”

A friend told me how skinny I looked, as a compliment, and asked what I was doing. “Well I’m taking an anti-lupus drug with a side effect of maybe having detached retinas and going blind someday, but it also causes you to lose pesky pounds! And I can pretty safely travel to any malaria-prone country because it treats that, too!”

happy-new-year-great-gatsby-toast-fireworks-animated-gif

Image: Leonardo DiCaprio in “The Great Gatsby” (2012), Village Roadshow Productions

And yet…

The homily at Mass today reminded me of that giant concept: PERSPECTIVE. The priest shared a story of how a family from his former parish had sent a mass text to all of their friends and family a few weeks ago to joyfully announce the birth of their son. They had discovered – and shared during the pregnancy – that their son had a chromosomal disorder, one which carries a devastatingly short life expectancy.

But the parents’ text on the birth of their son was as joyous as any parents’. They encouraged all of their friends and family to visit them and their son as often as they could while he was alive, and to do so joyously. This child was a gift, they said, and they wanted him to be celebrated as any child would. Perspective!

When I say “perspective,” I don’t mean thinking of how people have it worse off than I  do. I’m perhaps overly empathetic, so understanding that perspective usually isn’t far out of my mind.

I don’t even think I’m talking about counting my blessings, though I do and will.

I’m talking about finding a perspective of joy. Living the joy of life even through pain,  suffering and uncertainty. I don’t know what that looks like for me yet. I’m still processing it. And yes, the other perspective will probably help shape it. I’m living with chronic illnesses, not wondering when my child will die or watching my child battle osteosarcoma, as a friend currently is. I do worry that my daughters will inherit one of my conditions someday, but that’s nowhere near on the same level.

My understanding of my own faith will play a huge role.

But I am resolved to look for and find the joy. This is one New Year’s Resolution on which I may falter, but will not fail. I’ll update you on my progress throughout the year in different ways.

On December 31, 2019, I intend to report that I kept this resolution.

But it’s still 2018, so if you’ll permit me, I’ll say goodbye to this year with the sage words of Beyonce.

Beyonce middle fingers up

Image: “Sorry” by Beyonce. Rights and general gloriousness owned by Queen Bey.